Hospice vs big interventions - when the end draws near

[robinsmommy]

She is home and has been admitted to Hospice. I guess we just ride it out and see what comes. It was a real flurry yesterday to get everything ready for her, and I can see already that it will be challenging to keep our house running and take care of her, but I think/hope my girls will surprise me there.

I have mixed feelings about DH being an only child at this point. We don’t have to deal with a sibling having a hard time respecting her wishes and letting go, but we do have no one to share the burden with. Some of the family in the old country is questioning her decision and our support of it, but they are not here seeing how frail she has become. I think they really are just having a hard time letting go of the last of her generation on that side, a favorite aunt.

I hope she rallies enough to enjoy some company and a last small glass of wine or beer.

[StantonHyde]

This is typical--everybody who is not actually seeing the person questions the decision. You have to respond to her because she is competent to make this decision, and what you see in front of you. She is NINETY YEARS OLD. They need to let.it.go. God bless her. She will have lived an awesome life and it is ok to go without undergoing hellacious interventions in the last few weeks/months of her life. This is all about quality, not quantity.

I do feel for you--its not easy having somebody in your house. Good luck!!!

[DualvansMommy]

She is home and has been admitted to Hospice. I guess we just ride it out and see what comes. It was a real flurry yesterday to get everything ready for her, and I can see already that it will be challenging to keep our house running and take care of her, but I think/hope my girls will surprise me there.

I have mixed feelings about DH being an only child at this point. We don’t have to deal with a sibling having a hard time respecting her wishes and letting go, but we do have no one to share the burden with. Some of the family in the old country is questioning her decision and our support of it, but they are not here seeing how frail she has become. I think they really are just having a hard time letting go of the last of her generation on that side, a favorite aunt.

I hope she rallies enough to enjoy some company and a last small glass of wine or beer.

Sounds like you’re doing the best you all can at this point. I would seriously tune out the naysayers, especially if they are from long distance away. DH dealt with it on his end from his aunt/brother who doesn’t see his mom/my MIL as often we do because we’re 10 mins away. She’s 90 like your MIL as well.

Just take it a day at a time. It’s all you can do at that age/fragility of life. Good luck.


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[Kestrel]

A few words of advice from someone who's been there recently...

For out-of-the-area family - we made videos. Some showing him talking about his wishes/preferences. Some telling old stories/family history. It was obvious how frail he was in video.

Our social worker set us up with a care coordinator. We gave her all of the various insurance info - medicare, part B, long-term care, short-term care - and she handled all of the bills! Eight weeks of hospice care with 18 hour a day caregivers, and she juggled the insurance to pay the vast, vast majority of it. (I think we ended up paying a bit over a thousand dollars.) She also recommended three caregiver companies for us to interview... I like that they didn't just say to use a certain company. She was great. Her fees were a little high, but I think that she saved us at least that much. And not having to worry about bills during that time was a blessing.

The hospice people were great, but you have to _ask_ for what you need. We ended up with a hospital bed that was a great help. The are great about the meds if you ask... we had side effects with one, we had a conference call with hospice, family and caregiver and the tried something else that worked much better. When the pain meds made him loopy, they changed it to a liquid med we could scale up and down for pain control, so long as we kept careful records.

Most of all - talk to her. Have her tell you all about her growing up, family, things she saw/experienced.. you'll never get another chance.

[StantonHyde]

The videos are a great idea. That is one way people can see how frail the person is or hear from them that these are their wishes. When MIL's short term memory wasn't good anymore, I made sure to ask her about growing up and high school or nursing school, etc. All that stuff she could remember. And I coached my kids to do the same. It was fun hearing the stories.

[Kestrel]

Just wanted to let you know that we are thinking of you. Strength to you and yours in this difficult time.

[mom2binsd]

I'm an SLP and work with geriatric patients just like your MIL. At 90 given all the other health components I would usually counsel against a feeding tube. It's uncomfortable, can get infected, is a foreign tube in the body etc. I'm not sure how severe her swallow skills are, but they may be able to alter her diet to make it safer to consume "comfort/pleasure feeding". I'm so sorry that your family has to make these decisions, it's always hard to let go and our instincts are to do everything possible, but the outcome is not always going to be what you want, and prolonging things can be very painful/emotional. Please PM me if you have specific questions, but asking for a speech pathology consult to discuss diet safety would be appropriate.